Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

12,088,800


The opening song in one of the greatest musicals, Rent, is called “Seasons Of Love.”  I am paraphrasing, but the song asks “how do you measure a year?  In daylights, midnights, sunsets, coffees, inches…”  It is a beautiful song.

I have titled this post “12,088,800” with special accounting in mind.  March 3rd is the 23rd anniversary of completing my chemotherapy for Hodgkin’s Disease.  23 Years – 12,088,800 minutes.  Compared to the 10,400 minutes that I was given the chemotherapy, or the 30,600 minutes from the beginning of my Hodgkin’s Journey to the completion, 12.1 million minutes is a long time.

12 million not big enough number?  14 million.  There are over 14 million survivors of cancer.

I am often accused of under-appreciating what I have gone through from my first counselor to the long term caregivers I see today.  I was treated with four times the lifetime maximum exposure to ionized radiation.  I was injected with a chemical that Sadaam Hussein used to gas his own people with.  I was battling a disease that has killed over 600,000 Americans a year, over 1500 per month.  Chances are, this paragraph has your attention.  It should have mine, and it does to a degree, but not what it should.

March 3rd, 1990, I completed 30 treatments of radiation to the upper half of my body, and 8 cycles (fancy term in my case, for months) of a chemotherapy regimen referred to as MOPP-ABV.  I had five surgical scars to show the lengths travelled for my diagnosis and staging.  Statistics of survival were only referred to with a five year mark.  Up until March 3rd, 1995, I had never heard of anyone surviving cancer, let alone more than a year.

Fast forward twenty-three years, as I enjoy destroying odds and statistics, I once again have the world by the tails.  I officially have my longest monogamous relationship with the mother of the two most beautiful girls.  I have a nice house and a great job that I not only enjoy, but take great pride that it is a career that allows me to “pay back” the industry that has saved my life on numerous occasions.  My daughters are now old enough and curious about my “cancer” history.  I am mindful of the time when I was a child, and the only thing I knew about cancer was “people died.”  They are reminded with each conversation that people can survive cancer.  As if this were not enough, brief as it is, I am continuing a local political journey for our local school board that began three years ago.  There is so much for me to be proud of, appreciate, and celebrate.

But yet, on this date, March 3rd, I afford myself only the opportunity to recognize the importance of this anniversary.  I cannot celebrate it, which most people cannot understand.  Wife, kids, career, surviving cancer for decades, I have every reason in the world to celebrate.  But I do not, I cannot.  My survivorship comes with an extremely burdensome feeling, guilt.  Survivor’s guilt.  I live, while others have not.  I am in remission for decades, yet many deal with their third, fourth, fifth recurrence.  Hundreds of patients and survivors have come into my life.  Regardless the distance, I held each of their hands emotionally at the least, to offer comfort, confidence, solace.  But I have also shed so many tears, some of joy, too many of pain.

This is a great day, make no mistake.  I recognize the importance, the value of my survival.  In twenty three years, just two decades, I have personally witnessed the great things that have come in the progress of safer and more accurate diagnostics, safer and more effective treatments.  Because of research from institutions such as Memorial Sloan Kettering Cancer Hospital, the University Of Pennsylvania, and so many other institutions who have made cancer research a top priority, and without the support of organizations such as the Relay For Life, Livestrong, StandUp2Cancer, and so many more, that progress would not be possible.

Here’s to another year.  Thank you.  From the bottom of my heart, for those that took the journey of cancer before me, with me, and after me, I truly mean that.

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not on that road just yet, you’ll catch up to me.”

All Eyes On “You”


As a boy, I was raised by my grandmother for the most part.  She was a great example up to her dying day, one that I still follow to this day.  Though I truly miss her moral compass, I live under the credo, “do for others first, then me.”  That usually translates to never getting around to me, which I am perfectly okay with, in fact, that is what makes me happy, satisfied, fullfilled.

My neighborhood friends all loved my grandmother and called her grandma because she was such a safe place to fall, especially when they did fall.  Great at medical care, satisfying hunger with a quick snack, or even just cuddling up, knowing that I was in the safest spot, protected from anything bad, because that is what she did.

Even with a pending diagnosis of breast cancer, unbeknownst to me, she did all that she could to help me secure an apartment, including arranging for the deposit.  It was a week after I moved in that I heard the news.  I would never have left her had I known.  For all the years that she was there for me, it was now my place to be there for her, and she knowingly sent me away.

She has been gone from this earth for a very long time now.   My moral compass now in jeopardy, my values continue to stay in tact.  Just as I looked up to my grandmother I know that there are people who look up to me, seemingly in all places of my life.

Adoption – people want to be moms and dads.  When it comes to adoption, it helps when people reach out and share their experience.  Which is what led us to make the decision on China to adopt our daughters.  We attended an information meeting, where Lily Grace was sitting patiently and lovely, and we knew right away that was what we would do.  When we returned from China, just a few months later, we made the decision not only to adopt a second child, but to also speak at an information meeting as well, to hopefully inspire other parents as well.  The decision and process of any adoption, let alone international can be daunting.  It felt great to be able to tell and show that it could be done quite easily with assistance.

Animals – all I wanted was a dog.  What I got instead was a trip to Manhattan just after 9/11 with my Golden Retriever.  From a simple cardiac seizure to an all-out blitz resulting in a history of the dark world of Amish Puppy Mills, I stirred the attention of the PA Department Of Agriculture and dog warden, the USDA, and even a couple of newspapers.  But the ultimate was an offer to appear, with Pollo, on The People’s Court to settle my case where I had asked for valid paperwork for the dog, as well as information on his parents.  There was also the matter of his medical bills.  What I got was a sad lesson on what we as consumers do, condemming other dogs, just so that we may have that cute little puppy.

Bullying – I hate bullying in all forms, in all ages.  I do not feel that enough is done.  I do not feel that at some point, the victim must stand up for themselves.  It is a violation of a person’s civil rights to be emotionally or physically abused.  It is about the lack of respect for the person wanting to claim power over another.  With movies like Bully and programs like Olweus, hopefully we are getting closer to stopping this vicious issue.

Cancer – what can be said, on Sunday, I will hit 23 years cancer free!  While I know the impact that I have on my children, and they are getting to the age where they can understand what I went through, in the here and now, I hope that #23 has an impact for so many people.  I am just two years away from 25 years cancer free from Hodgkin’s Disease.  This is a big deal as statistics generally only refer to “five year” marks.  Along with writing, this year I have made the decision to tour and speak about cancer survival.  I am warming up for that monstrous anniversary.  The great thing?  I still am in awe of those who have survived their cancers even longer.  I actually know someone sixty years post-cancer.

Education and Politics – So my latest endeavor over recent years was to toss my hat into local politics.  Those around me often remark, “do you really need that in your life given everything you have been through?”  The answer is yes.  Running for the office of school board director is important to me, because protecting public education has a direct impact on my children, who have another ten years to go.  And I believe that everyone’s children will benefit from the effort that I will put into that office.  It is so inspiring and meaningful to stand up in front of so many people, many of them strangers, give a heart felt speech about how you will represent them and why, and when you are finished, you receive a standing ovation because they not only believe you and have faith in you, they trust you and want you to know that they are standing behind you.  It is one thing to be recognized as a passerby, but it is such an honor to be encouraged and supported.

Family & Friends – This is one area where I tend to lay low.  My family is not very open when it comes to health and emotions.  And I have a tendency not to lean on my wife’s family either.  It seems to be a much scarier experience to be that close to someone who has battled a serious illness such as cancer or an attack like a cardiac episode, than if it is just a story you may have seen on social media.  But it is through social media that I consider so many, my friends.

Side Effects/Survivorship – I have been an active participant on an internet support group called “American Cancer Online Resources”, ACOR.ORG for close to sixteen years.  For years I have watched so many deal with the “rewards”, rather consequences of their decision to fight and defeat their cancer.  A tremendous amount of progress has been made in just the short time that I was treated from treatments, diagnotics, and follow-up protocol to make sure that patients get the most out of their cure.  I want to make it perfectly clear, I have no regrets about the treatments that I went through.  I just want to serve as inspiration and hope to the millions who will either be diagnosed, or who are currently battling cancer.  The technology is out there to help us with our late term issues.  Unfortunately, just as with our cancer battle, we have to fight to locate this assistance, and then pursue it, but it is there.  If you have had cancer and been treated, and you just cannot come up with an answer to what is making you feel awful or causing pain, it just might be time to do some research.  As one of my doctors puts it, “we cannot reverse them or stop them (the side effects), but we can slow them down so that you get to enjoy your grandchildren”.  Which is hopefully at least another twenty years before I hear that word.

Heart Issues – Just one of the many side effects that I have had to deal with, no one looks at me and knows that I had heart surgery unless I have told them.  Which again, is due to progress and care.  The care that I recieved to diagnose, treat, and rehabilitate.  Now, it is about maintainance and not looking back.  I know everyone is watching.

When You Get A Minute


It’s usually never a good thing when you get a call and it goes, “when you get a minute, can you stop by my office.”  Whether it was the school principal, your boss, even sometimes a spouse, the phrase “when you get a minute” is actually not what the person means.  It means you are going to be asked to “have a seat”, and probably some stalling to get to the point.

There are physiological and emotional reactions when you get that call.  If it was for the principal at school, it was like walking the “Green Mile” to get to that office.  Even if completely innocent, just the fact that you are being called makes your heart sink, perhaps your breathing to increase in rate.

If it was good news, most times, that comes right out, never “when you get a minute”.  Unless of course it is a surprise, like in a party, not termination or suspension.

Being in a union, a meeting “when I get a minute” is usually accompanied with, “you may want a shop steward” (representation).  Fortunately, for me, that just means that my supervisor knows that we both need that second set of ears.  I have a mind like a steel trap when I am put on the defensive and I want to make sure that at least one other person has heard what was said.  The other side likes the ears just in case I say something wrong, that my steward also heard what I said to their benefit.

Today, fortunately is not one of those days.  I got one of those phone calls, and though it did mean more than a minute, the news was encouraging.  Today I get to breath a little easier.  Unfortunately, I do not get to do that, or enjoy that break for too long.  If you have been reading my blog long enough, you already know that.

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